Children with Duchenne muscular dystrophy (DMD) are often late walkers. In toddlers, parents may notice enlarged calf muscles (see image at right). This enlargement is known as pseudohypertrophy, or "false enlargement," because the muscle tissue is abnormal and may contain scar tissue. A preschooler with DMD may seem clumsy and fall often. Parents also may note that children have trouble climbing stairs, getting up from the floor or running. By school age, children may walk on their toes or the balls of their feet with a slightly waddling gait, and fall frequently. To try to keep their balance, they may stick out their bellies and pull back their shoulders. Children also have difficulty raising their arms. Many children with DMD begin using a wheelchair sometime between ages 7 and 12. Transition to a wheelchair usually is a gradual process; at first, the chair may be required only to conserve the child's energy when covering long distances. (Children often experience renewed independence once they fully transition to a power wheelchair.)
In the teen years, activities involving the arms, legs or trunk may require assistance or mechanical support. The muscle deterioration in Duchenne MD isn’t usually painful in itself. Some people report muscle cramps at times; these usually can be treated with over-the-counter pain relievers. Because muscular dystrophy doesn’t affect nerves directly, touch and other senses are normal, as is control over the smooth, or involuntary, muscles of the bladder and bowel, and sexual functions. Lack of dystrophin can weaken the muscle layer in the heart (myocardium), resulting in a condition calledcardiomyopathy. Over time, sometimes as early as the teen years, the damage done by DMD to the heart can become life-threatening. The heart should be monitored closely, usually by a pediatric cardiologist. See Medical Management for more on cardiomyopathy in DMD. Beginning at about 10 years of age, the diaphragm and other muscles that operate the lungs may weaken, making the lungs less effective at moving air in and out.
Although the child may not complain of shortness of breath, problems that indicate poor respiratory function include headaches, mental dullness, difficulty concentrating or staying awake, and nightmares. Weakened respiratory muscles make it difficult to cough, leading to increased risk of serious respiratory infection. A simple cold can quickly progress to pneumonia. It's important to get flu shots, and when infections occur, to get prompt treatment. See Medical Management for more on respiratory care in DMD. About a third of boys with DMD have some degree of learning disability, although few have serious mental retardation. Doctors believe that dystrophin abnormalities in the brain may have subtle effects on cognition and behavior. Learning problems in DMD occur in three general areas: attention focusing, verbal learning and memory, and emotional interaction. Children suspected of having a learning disability can be evaluated by a developmental or pediatric neuropsychologist through the school system’s special education department or with a referral from the MDA clinic.
If a learning disability is diagnosed, educational and psychological interventions can begin right away. The specialist may prescribe exercises and techniques that can help improve these areas, and the school also can provide special help with learning. See Medical Management for more about learning disabilities in DMD.Okay, I admit it. I would rather touch myself in front of the Pope than talk openly about masturbation. But having children has forced this issue upon me and now I find myself having explicit conversations with other mothers, regarding our children’s, ah, personal interests. And, just to clarify here, I’m not talking about adolescent children, I’m talking about toddlers on up to say, six or seven years old – at which point they begin to, thankfully, develop the virtue of social embarrassment and cease to stimulate themselves unabashedly at the grocery store, during play dates, in front of Dora the (other) Explorer and, worst of all, in Nana and Papa’s living room.
That I didn’t know young children actually masturbate, I assume, had to do with my own memory lapse. Although my parents were liberal about many things, I don’t think masturbation was one of them. I’m sure theirs was not a moral objection, just something they viewed as so mortifying it was worth putting an end to with a harsh reprimand. As a new parent, I shared their point of view that it was embarrassing behavior, but ours was a household far too enlightened and child-centered to use negative reinforcement in an attempt to end an act of healthy self-discovery. When I saw that it was becoming a more frequent, and seemingly intentional behavior on my daughter’s part, I wasn’t quite sure how to deal with it. My concern may have been based on my own sexist assumptions about such behavior. From the beginning, I was determined to raise my daughter with the girls-can-do-anything-boys-can-do approach. I just didn’t know that at a very early age, anything would include that.
My friends who were parents of male children seemed far less surprised by their sons’ self-stimulating activities. In my conversations with moms of little boys, it was all about the pointing, prodding and pulling – starting at a very early age. They talked about it matter-of-factly – sometimes even with pride that their little angel found “his favorite toy.” During a routine pediatrician visit, I worked up the courage to broach the subject. I saw right away that I had provided our doctor with a ray of sunshine in an otherwise dull day full of vaccinations and strep cultures. My reluctance was quickly countered by his sheer delight. First, he asked, “Does she bring herself to orgasm?” She was a toddler, for God’s Sake. And how would I know? I calmly told him I didn’t know, but she just seemed to do it quite often. I added, “I thought it was just a phase, but she keeps doing it.” He smiled and asked, “What made you think she would stop?” It turned out my pediatrician’s glee at having the opportunity to discuss this issue was due to the fact that he had written a professional paper on the topic, one that he had the nurse give to me at the end of our appointment, titled “Masturbation in Early Childhood.”
I was relieved to see the word “early” in the title, since at the time of our conversation, my daughter was barely a year old. I had no suspicion of anything sinister. There was no question of possible abuse, (a worry often associated, among other symptoms, with excessive self-stimulation in children). Instead, I worried whether this was normal behavior for a child so young. Later, normal developmental milestones aside, as my daughter grew into a two-, three- then five-year-old, my worry vanished and I was just left with acute social embarrassment. Here’s what I learned during that visit. Apparently, masturbation is both a common activity for young children, sometimes even babies, both boys and girls, and a common source of stress and concern among parents – who, like me, want their children to grow up to be socially and sexually well adjusted people — the kind of well adjusted people who later in life have normal, healthy sexual relationships and who, as children, do not straddle the corner of the coffee table, rocking back and forth until their faces turn beet red during Mommy and Daddy’s dinner party.
In my own reading, I discovered that, like all other aspects of human sexuality, the thinking on this particular activity has changed with each generation. Over the centuries, most religions have had something to say on this issue (usually in the form of discouragement), but in the mid-1700s and into the late-1800s, the medical establishment jumped on the bandwagon against what was then known as “self-abuse” or “self-pollution.” Health reasons were cited as motivation for preventing children from masturbating, and physicians warned of the horrible physical and mental consequences – blisters, hair loss, seizures, and insanity – certain to follow the act of self-gratification. A variety of gizmos with names like “the Cage,” and the “Penis-Cooling Device,” that probably sounded ominous at the time but today might sell like hotcakes on an adult web site – were created to prevent children from engaging in self-stimulation. Today’s medical experts take a far more enlightened view on the matter.
All the name-brand pediatricians, from Spock to Sears to Brazelton, reinforce the idea that children will engage in self-exploration, and will derive pleasure from such activity. They all agree that masturbation is safe, healthy and commonly practiced by infants, children and adolescents. According to an article titled the “Unveiling the Secrecy Behind Masturbation,” which appeared in the publication Pediatrics in Review, 2002, “Children as young as 5 months of age will commonly manipulate the genitalia, especially the penis.” The article goes on to say, “Masturbation may occur at any age, but it is particularly common among toddlers, preschool children, and adolescents.” All of the modern literature on this subject reinforces the sensible and humane idea that shame and ridicule must be avoided when it comes to dealing with such displays on the part of children. (Husbands and co-workers don’t enjoy the same pass – but that’s just my personal standard.) Finally, the experts seem to agree that it’s important to help children distinguish between public and private behavior, thereby not thwarting the activity, just providing socially acceptable limits for Kinsey Junior.
Progress is also evident on the religious side. When concerned parents write in asking for advice regarding their children’s maturbatory activities, he explains that Scripture does not directly address this subject, and that masturbation “is as close to being a universal behavior as is likely to occur.” He even reveals his, um, touching, story about the time he was riding in the car with his father, who initiated a heart-to-heart conversation with him on the subject. His dad confided that when he was a boy, he worried that God was condemning him for what he “couldn’t help,” and assured young James by saying, “I hope you don’t feel the need to engage in this act when you reach the teen years, but if you do, you shouldn’t be too concerned about it, I don’t believe it has much to do with your relationship with God.” Admirable show of unconditional acceptance. And really impressive sharing. My astute and sympathetic pediatrician, in an attempt, I’m sure, to further assuage my fears, told me that intelligent children who discover that stimulating their genitals is pleasurable figure out a way to repeat the experience.
I left the appointment confident that I had the smartest little kid in his practice. By the time our second daughter was born, we had a name for this activity: “private time.” And when she began to exhibit the same, normal self-exploratory behavior, we were way over our neurotic concern, and shrugged it off as just another of our offspring with advanced intelligence. As the girls grew into walking, talking creatures with the capacity for at least some amount of reason, the concept of public and private seemed to sink in – and there were less awkward moments in front of family and friends. I think in spite of my routine humiliation (did I mention my early years in the Catholic Church?), my kids were given the latitude and limitations they needed to develop a healthy regard for their own bodies. Still, every now and then, private time is not as private as it could be, and I wonder if in our attempt to avoid attaching any negative connotation with bodily pleasures, we’ve created an overly permissive environment.